I’m BADD

Blogging Against Disablism Day

Yup, that’s right, I’m Blogging Against Disablism (to)Day.  I haven’t blogged in a long time.  Actually, it’s been over a year since I did so.  Knowing it’s BADD today got me thinking though.  I’ve been through quite a journey over the past 17 years, and one that’s given me a lot of twists and turns in the past year.

It’s never been any secret on this blog that I have been dealing with chronic illness leading to disability.  This time last year it was a diagnosis of ME with severe food and chemical allergies I’d been living with – I’d had the ME diagnosis for over a decade.  A year on the diagnosis is now Chronic Epstein-Barr Virus Infection, which led to the severe food and chemical allergies.  I thought back to how long it took me to accept that I was ill in the first place.  16 years ago I was struggling with the reality I wasn’t like I was before, something with my body was going wrong.  It took me even longer to realise that as a chronically ill person, I was now living with disability.  Years.

When my disability worsened a couple of years ago or so, accepting I needed the use of crutches was one of the biggest things to overcome for me.  Getting them was one thing, but taking them out with me, using them, and people seeing me using them, that was quite another thing.  What if someone saw me who knew me?  What if people stared?  It now marked me out as having mobility problems.  As far as I was concerned it was like a Belisha beacon.  This is in the day that disability wasn’t as stigmatised by the UK government as it is today.  I still use my crutches, but on the rare occasion I go out I now have to use a mobility scooter or wheelchair if I’m going to be going further than a short walk.  Again, adjustments to needing these have been needed, especially going round my home town, but now I don’t care like I did before.  They enable me.

So imagine being slapped round the face a few times with a wet fish.  You’d be pretty stunned, huh?  Then you’re told that you’ve spent the last 16 years of your life thinking your name was John or Jane, when actually you were called Rupert or Ruth.  You’re back to that wet fish aren’t you?  This is pretty much what I had to deal with last year when that rediagnosis happened.  Suddenly certain things were explained, why my allergies worsened and developed, why my skin was so awful, why I’d had golf balls for glands for years.  The list went on.  Then the realisation – there was treatment I could have to make me feel better.

So you see, ‘just’ having a chronic illness and disability requires a lot of adjustments, and I haven’t even mentioned the day-to-day adjustments to my life I’ve had to make and come to terms with.  Suffice it to say, resting is top of the agenda, and not much else gets done!

There are a few things I shall never accept that surround being chronically ill and disabled.  I shall never accept the increasing demonisation by this government of the disabled, who have too often been portrayed as scrounging fraudsters in the press together with selected examples backing this up.  I shall never accept the increasing hoops we have to jump through to claim the benefits we are entitled to so we can live (which is becoming more like a full-time job with every welfare reform).  Life for a chronically ill person is hard enough without having to deal with these things.